Catch Up

So far, Baby A seems to be a perfectly fine, happy, curvy (not fat) baby.  She’s very low-maintenance and happy.  She laughs and furiously sucks on her fingers.

Baby B is also happy and sweet.  She loves to cuddle (demands it, really).  However, she has a lot going on with her health:

Our main concern right now is her kidneys.  They were affected by the lack of blood flow so that they are not functioning normally.  The nephrologist keeps a close eye on her labs and ultrasound images to monitor the kidney function.  Poor little Baby B has to have blood taken at least once a month (normally more), along with urinalyses and ultrasounds every couple of months.  The doctor told us that there is a greater than 50% chance that she will need a kidney transplant, but he is hoping we can hold it off as long as possible.  Her nephrologist also diagnosed a heart murmur in early January.  Thankfully, the cardiologist said it appeared to be normal and was closing on its own.

Our pediatrician thought we should wait to see a neurologist, but Baby B’s limbs seemed to be getting tighter.  We got a referral from the nephrologist for a neurologist, who she saw in April, who officially diagnosed her with cerebral palsy.  It’s not the typical cerebral palsy; it’s caused by “something something brain something due to twin-to-twin transfusion.”  The injuries occurred to her occipital and parietal lobes, mostly on the left side; these were due to the lack of blood flow caused by TTTS.  Basically, what happened to her kidneys happened to her brain.  The doctor was impressed by everything she could do, and he said that he’s often pleasantly surprised by what babies who are born with brain injuries are able to do.   He prescribed physical, occupational, and speech therapies to help her loosen up and make sure she has as everything she needs to succeed.

The therapies have been amazing!  She goes twice a week for three different therapies, and she’s been making great progress.  Now, she can suck on her hands, lift her hands above her head, and kick more.  She’s also becoming better at tummy time.

Our little B’s head circumference has grown a little bit.  We don’t know how much more it will grow, though.

She also is going to have a consultation with a pediatric ophthalmologist because her left eye looks really crossed, and it’s getting worse.

The speech therapist noticed a lip tie (where the connective tissue connecting the upper lip and gums goes all the way down the gum line).  This could be why she has trouble eating sometimes, because she just mashes down on the nipple, since she can’t properly suck.  We are going to call a pediatric dentist to see if he can take care of it quickly and easily.

We’re hanging in there.  As the girls get more and more into a routine, life gets a little bit easier.  Our little toddler son has adjusted gradually to sharing attention with the babies, and he can be very sweet to them.  We try to make special time with him to play monster trucks or go to the park .

That should catch us up to where we are today so I can start trying to keep the posts more in the present.

To read about the rest of our TTTS journey, click here.

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